Spotlight

preventive surgery; a growing number of women are opting for prophylactic mastectomies

Janice Spinner isn’t your usual tattoo candidate. The 56-year-old mother of three sits with perfect posture on the couch in her spotless South Windsor home, her hands folded neatly in her lap.

Her prim manner belies a determined spirit as she explains in her youthful, chirpy voice what will lead her to go under the laser later this year.

“I have to get my nipples put on,” she says. “I’ve been living with my body the way it is, and it’s time to make it complete. That’ll be it. I’ll be done.”

Like many women who have had a mastectomy and reconstructive breast surgery, creating the delicate illusion of a nipple by tatooing will be the final step in Spinner’s cancer saga. Unlike most mastectomy patients, though, Spinner’s surgery wasn’t prompted by a cancer emergency.

Though she had already fought off breast cancer through a lumpectomy, chemotherapy and radiation, she was cancer-free and healthy at the time she had both breasts removed.

Spinner is one of a growing number of healthy women who are wresting control from cancer by choosing preventive surgery.

“We’re definitely seeing more women having the surgery now,” says University of Toronto breast cancer researcher and nursing professor Kelly Metcalfe. She estimates that 10 years ago, about 15 Ontario women per year had preventive mastectomies on both breasts. Today, Metcalfe estimates the same number have the surgery each year at Toronto’s Women’s College Hospital alone. At London Health Sciences Centre, roughly 80 women get the operation each year.

Spinner may have been cancer-free when she had the surgery, but worry-free? Not a chance. “How do I know this cancer is out of my body?” Spinner remembers asking herself after achieving a clean slate of health. “You’re waiting from doctor’s appointment to doctor’s appointment, from bloodwork to bloodwork, from mammogram to mammogram and hoping that they’re not going to find anything more.”

Spinner had good reason to worry. Cancer had already decimated her family, killing her sister and three aunts and plaguing two cousins. Her family tree of cancer was rooted so deeply that her oncologist suggested she get tested to determine whether she carried the breast cancer gene mutation. Studies have shown that while the normal population of women has an 11 per cent chance of getting breast cancer, women with the gene mutation have a 45 to 87 per cent chance of being diagnosed with the disease.

Spinner wasn’t surprised when her test came back positive. When her oncologist suggested a voluntary mastectomy and hysterectomy, she agreed that surgery was her best chance at survival. With the gene mutation lurking inside her body, the operations would deliver peace of mind — and a drastically decreased cancer risk. Some researchers estimate prophylactic mastectomy can reduce the cancer risk for mutation carriers by about 90 per cent.

“I knew that’s exactly what I had to do to beat this disease. I just knew it would have come back to get me,” Spinner says.

Svetlana Miskovic has decided not to have prophylactic surgery — even though she has already faced down cancer three times in her 69 years and knows the disease could once again take hold in her body. “I understand that aspect of fear,” she says. But to me, it’s very unreasonable to chop your body when you may not have it in the end. Of course you do it if it’s the last resort, but I know that I would never, never do that to myself unless I had to.”

Miskovic has also opted out of the gene test. She cites concerns about the accuracy of the test and about her privacy once she hands over her genetic material and the information it contains.

London Health Science Centre genetic counsellor Nancy Scanlan says since the study of human genes is so new, scientists have hardly begun to understand what makes our genetic material tick. She admits while the test can be up to 95 per cent accurate, it’s not perfect. “There’s always a risk that things can be missed or that results can’t be interpreted properly.”

Unlike Spinner, who feels the gene test and surgery granted her an escape from cancer, Miskovic says she doesn’t believe the test would give her peace of mind. “Why would I want to know in advance and be stressed that it might happen? You just want to live your life.”

Miskovic says after her cancer battles, she’s made peace with her mortality. “You look at yourself, and you realize that there is always an end — with cancer or without cancer. You sort out your feelings, your memories, your life, your qualities, your failures, everything. And you say, ‘I’m fine, and if I go tomorrow, I go.’”

In the medical profession, attitudes toward prophylactic mastectomies have changed drastically in recent years, Metcalfe says. “I remember when I first started doing research, we had a 1-800 number we were using to try to get in touch with women who had the surgery. We used to get messages saying how barbaric this was, asking ‘How could you do that to a woman?’”

Today the surgery is recommended by oncologists and genetic counsellors to gene mutation carriers, with roughly 25 per cent of the known carriers opting for prophylactic mastectomy. “They’re being given the information that they have up to an 87 per cent risk (of developing breast cancer) in their lifetime. These women need to make decisions early to catch cancer before it ever develops. For those who want best protection, prophylactic mastectomy is their best option.”

Teresa Schincariol represents one of the fastest growing categories of women who opt for the surgery — young, healthy women who have never had cancer, but who carry the gene mutation. Schincariol got the gene test at 36, had a hysterectomy at 39 and now, at 43, is awaiting a mastectomy. With two daughters to look after, the surgeries were a “no-brainer,” she says.

“I don’t want to have that continuous worry and that continuous fear. With prophylactic mastectomy, I have the choice. Cancer isn’t making this decision. I get to make the decision.”

One of the choices she had to make is whether to undergo reconstructive surgery — to create new breasts using muscle and fat from the abdominal area — or to get implants, use prosthetics or remain flat-chested.

Dr. Muriel Brackstone, a surgical oncologist at the London Health Sciences Centre, said though post-surgery options have improved in quality, the number of women who choose reconstruction is still miniscule, with just five per cent of mastectomy patients choosing reconstruction.

“That’s just a disgusting statistic,” she says.

Doctors who perform reconstructive breast surgery are few and far between, Brackstone says, and many physicians simply don’t mention reconstruction as an option.

“It’s something we really need to advocate. Women shouldn’t have to go without reconstruction based on geography or resources.”

As Schincariol made her decisions about getting the gene test and having the operations, she relied on the Cancer Genetics Support Group, a Windsor group she helped create to guide women through the confusing and emotionally intense period.

But for her, the decision to get implants was relatively easy. She says she had always planned to have breast lift surgery after having children. “I’ll get new boobs,” she laughs. “I’ll still look good in a bathing suit.”

Sitting in the doctor’s office with the doctor who will perform her implant surgery, Schincariol checked out her options for breast size and construction.

“I thought it was really neat,” she says. “Here we are, ordering my new breasts through a catalogue. I thought, ‘OK, I like this. This is great.’”

The breast cancer gene test, which also screens for ovarian cancer, is a simple blood test, and results usually take four to six months. Candidates for referral to the genetic clinic must meet one of the following criteria.

IF ANY FAMILY MEMBER, INCLUDING THE CANDIDATE

- Has been diagnosed with breast cancer under the age of 35

- Has been diagnosed with ovarian cancer

- Has been diagnosed with more than one type of cancer

- Is an Ashkenazi or Jew and has had breast or ovarian cancer

- Has had breast cancer in both breasts

- Is a known carrier of the gene mutation

OR

- If any male member of the family has had breast cancer

- If there are multiple cases of either breast or ovarian cancer in the family

- Anyone who meets one of these criteria and is interested in a referral to the genetic clinic should consult their family physician.

- Those interested in learning more about the Cancer Genetics Support Group can call 519-250-1133.